When and how should people conceived using donor sperm or eggs be told of their origins?

17 April 2013

The Nuffield Council on Bioethics has today published a report that says parents of donor-conceived children should be the ones to decide what to tell their children about their conception, but that they need more support in making and following through this difficult decision.

The Council suggests that the state has an ethical responsibility to ensure that appropriate support for donor-conceived people, their families and donors is available at all stages where there is a need. This support could come from a variety of sources. For example, the Council recommends that fertility clinics should step up the level of counselling offered to prospective parents, new parents and potential donors, and that support services should be available to donor-conceived people who contact the regulatory body (HFEA) in the future to find out the identity of their donor. The voluntary sector also has an important role to play, drawing on the expertise of those with personal experience of donor conception.

Donor conception affects many people in the UK, with around 1,500 children born each year following donor-assisted conception treatment in clinics, and more than 35,000 people conceived in this way since regulation was introduced in 1991.

Evidence suggests that although donor-conceived people are increasingly being told about their origins, many parents do not tell, despite being widely encouraged to do so.

Dr Rhona Knight, a GP and the Chair of the Nuffield enquiry, said:

“In recent years there has been a culture shift – advice from professionals has gone from the extreme of never telling, to always telling.We think it is usually better for children to be told, by their parents, about their donor conception, and if parents do decide to tell them then earlier is better.”

The Council’s report rejects the idea that the state should intervene to ensure that people find out, for example through a mandatory declaration on the person’s birth certificate.

“You can understand why some people would view knowledge of and about their biological origins as an automatic right, butfamilies are not just about individuals - they are also about relationships. What we have tried to do is to balance out the views and interests of all those involved – donor-conceived people, their parents, and donors. We don’t agree that the decision of what and when to tell should be taken completely out of parents’ hands. There are better ways of supporting people through these complex situations” said Dr Knight.

The Council recommends:

Fertility clinics should routinely offer counselling to prospective parents as part of pre-treatment consultations, and a further support session during pregnancy or infant years. These counselling sessions should be about supporting parents to think through the implications of any decisions they make - not telling them what they ought to do.

The Government should ensure that appropriate intermediary support services are available for donor-conceived people and donors if contact is being considered.

The HFEA and the Donor Conceived Register should initiate a public information campaign about donor conception highlighting that it is possible for past donors who originally donated anonymously to re-register to make themselves identifiable.

Information about support services for donor-conceived families should be included in materials routinely given to all pregnant women and new parents by the NHS.

The Council also considered issues around access to medical information about donors. Clinical geneticist and member of the Working Party Professor Anneke Lucassen said:

“It would be very rare for a serious genetic disorder to occur as result of donation, as donors are screened for serious strongly heritable illnesses and will not be allowed to donate if they appear to be at risk of passing on such diseases. But the Council feels strongly that there should be a clear and well-publicised route for information sharing should a donor develop a genetic condition later in life that was not apparent at the time of donation. The same should apply in reverse - so that donors are alerted if a serious inherited condition is diagnosed in a donor-conceived person.”

2. Current and previous regulation regarding access to information about donors

People conceived with gametes donated after April 2005

At age 18 can obtain identifying information about the donor.

People conceived with gametes donated between August 1991 and April 2005

No identifying information available unless the donor chooses to become identifiable, although the HFEA can supply non-identifying information.

People conceived before regulation began in 1991

No access to any information via the HFEA, although limited information may be available from clinics.

The voluntary Donor Conceived Register offers the possibility of being ‘matched’ through DNA testing if donor and donor-conceived person both choose to join.

Matches between donor-conceived siblings are also possible.

3. The project

The Nuffield Council on Bioethics established a Working Party in February 2012 to examine the ethical issues raised by the sharing of information in the context of families created through assisted reproduction using donor eggs, sperm or embryos. The Working Party, chaired by GP Dr Rhona Knight, included members with expertise in fertility services and counselling, voluntary sector involvement in gamete donation, research with donor-conceived families, clinical genetics, ethics, anthropology and law. To inform its deliberations, the Working Party:

Held a series of face-to-face meetings involving more than 50 people with personal experience of donor conception, or who work closely with those involved. These meetings aimed to provide an open forum where the many different views about these issues could be heard.

Held a public call for evidence from March to May 2012. Contributions were received from 130 individuals and organisations, including many from people directly affected by donor conception. Responses to the call for evidence will be available on the Council’s website www.nuffieldbioethics.orgfrom 17 April 2013.

4. Working Party members

Dr Rhona Knight (Chair)

General Practitioner and Senior Clinical Educator, University of Leicester

Dr Wybo Dondorp

Assistant Professor, Department of Health, Ethics and Society, Research Schools CAPHRI and GROW, Maastricht University

Professor Jeanette Edwards

Professor of Social Anthropology, School of Social Sciences, University of Manchester

Professor Susan Golombok

Director, Centre for Family Research, University of Cambridge

Professor Anneke Lucassen

Professor of Clinical Genetics, University of Southampton; NHS Consultant in Clinical Genetics, University Hospital Southampton

Professor of Medical Law and Ethics, Centre of Medical Law and Ethics, Dickson Poon School of Law, King’s College London

Ms Laura Witjens

Chief Executive, National Gamete Donation Trust

5. About the Nuffield Council on Bioethics

The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics.